May/June REN members and partners have been super busy, check out the June 2025 REN Newsletter. rareepilepsynetwork.org/so/9ePTM4NjV...

June 2025

The Promise of Precision Therapies... Children’s Hospital of Philadelphia (CHOP) made national news and history by treating an infant with a customized gene therapy. This gives our community hope for ...

rareepilepsynetwork.org

Last call for AES 2025 Abstracts! Make your research seen at THE epilepsy conference.

American Epilepsy Society@amepilepsysoc.bsky.social · last yr.

AES is the ideal venue for #epilepsy scientists to present research results to a global audience. Submit your abstract to be considered for presentation at #AES2025 in Atlanta this Dec! Abstract submission is open until 6/9, 12:00 PM PT. buff.ly/C4syTQT #neurotwitter

@Ana Rita Moreira of the REN member @vatpasealliance.org shared her moving advocacy story, "Don't Let the Light Go Out," with the @Epilepsy Foundation's Foundation Quarterly Spring 2025. The energy and determination of their community is contagious. www.flipsnack.com/epilepsyfoun...

Foundation Quarterly Spring 2025

Flipsnack is a digital catalog maker that makes it easy to create, publish and share html5 flipbooks. Upload a PDF or design from scratch flyers, magazines, books and more.

flipsnack.com

REN partner DEE-P Connections is putting on a webinar about a very important topic! Marriage and Parenting a Medically Complex Child. TONIGHT! deepconnections.net/event/relati...

Relationships 101 - Marriage & Parenting a Medically Complex Child - DEE-P Information Resource Center

Join us, as Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) unpacks the realities of working on your marriage while parenting a child with disabilities and medical complexiti...

deepconnections.net

The majority of REN member organizations were created by volunteers, and volunteers are their engine! This Volunteer Appreciation Week, we want to take a moment to thank those volunteers who have genuinely been changing the odds for those with rare epilepsies and inspiring others! They are heroes!

REN's March/April 2025 Newsletter is out, including a new "Washington Watch" Section to help navigate the changes and suggest actions to elevate our voices in this crucial time! rareepilepsynetwork.org/so/78PNSraUo...

March - April 2025

It just keeps coming and coming... Everytime we sat down to write this newsletter and felt like we had even a small handle on everything happening, something new (and often terrible for rare epilepsie...

rareepilepsynetwork.org

Joining REN connects you to 150+ leaders of communities affected by rare epilepsy who know there is very little training to be an advocacy leader. Visit www.rareepilepsynetwork.org/members-part... to check out our members and partners and join.

Allison Moise, BSW, our Peer Support Coordinator, is at the National Epilepsy Walk and a part of the first cohort of epilepsy research ambassadors going through training today! She ran into Ilene Miller from @rareepilepsy.bsky.social today, too! #NeuroSky #Epilepsy #Advocacy

This Friday, get to know two REN members doing amazing work for their communities on our Blog page. www.rareepilepsynetwork.org/blog. This week, the Koolen-de Vries Syndrome Foundation and Foundation for Angelman Syndrome Therapeutics leaders shared what they are especially proud of.

Community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day—not just in March. Share Now: forms.office.com/r/FP6KbAV8MS Meet us, know us, involve us. #WeReHereAllYear #NACDD #DDAwareness

On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase. To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org

REN's members and partners are out there celebrating Rare Disease Week. Check out some of the amazing activities these movers and shakers are undertaking. www.rareepilepsynetwork.org/so/ccPKRNuQo...

February 2025

Feeling Helpless and Frustrated... We know we speak for many when we say we are feeling exhausted and frustrated. We have been hearing from concerned colleagues at academia, government, nonprofits and...

rareepilepsynetwork.org

Spread the word!! and Alternative Event for Rare Disease Day in DC! Thank you to Worldwide Clinical Trials for providing this opportunity! www.linkedin.com/posts/worldw...

Worldwide Clinical Trials on LinkedIn: #rarediseaseday #nih #fda #rallyforrare #communitydriven #researchmatters | 17 comments

RALLY FOR RARE IS GOING FORWARD! Thanks to the overwhelmingly positive response from all of you, we are moving forward with a community-led #RareDiseaseDay… | 17 comments on LinkedIn

linkedin.com

Rare Disease Day is coming up on Friday! The Rare Epilepsy Network is so proud to have so many advocates out there celebrating this week in their countries, cities, states, and capitals! Please celebrate with us by spreading the word!

Rare Epilepsy Advocates headed to DC this week for Rare Disease Week events; there will be a casual meet-up on Wednesday, Feb 26, 2025 starting around 5:30pm (est) at Logan Tavern, 1423 P St NW, Washington, DC 20005, USA. Connect with Ilene Penn Miller if you need more details or plan to go!

Key Discussion Topics: • What are the most critical economic impacts on caregivers? • How do these impacts differ across various patient and caregiver contexts? • What gaps exist in current research, and how can we address them? app.glueup.com/event/the-ec...

The Economic Realities of Caregiving | Center for Innovation & Value Research

Explore caregiving’s economic challenges and their impact on patients, families, and the broader healthcare system. This interactive workshop will provide actionable insights for researchers, patients...

app.glueup.com

This week is Seizure Action Plan Awareness Week! Don't delay – take control of your health today by creating your Seizure Action Plan! Download your SAP today, available in seven different languages: sprout.link/epilepsyfdn?...

Today we Celebrate International Epilepsy Day & The Rare Epilepsies! This day encourages everyone, regardless of how they are affected by epilepsy, to advocate for global human rights for people living with epilepsy. www.rareepilepsynetwork.org

We’re thrilled to introduce this year’s @ODC_UPenn's Genetic Counseling Student Exchange (GCSX) participant from the Penn Medicine Genetic Counseling Program. Over the next 10 weeks, they'll be working on advocacy projects for REN @odc-upenn.bsky.social

TODAY, 3pm EST "Growing Together: Navigating the Life Stage Checklist for Families." Register here: us02web.zoom.us/webinar/regi...

Join us Feb 6, 2025 2pm CST for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families. us02web.zoom.us/webinar/regi...

REN members/partners have some exciting events! Today, our partners at DEE-P Connections are hosting a webinar 'Making sure every inchstone of progress is measured – Update on The Inchstone Project." register deepconnections.net/events/. All REN Events www.rareepilepsynetwork.org#:~:text=Cale...

Are you looking for an opportunity/job in the rare epilepsy space? Several REN members/partners have openings. Check them out here! docs.google.com/spreadsheets...

Public REN Member/Partner Job Openings (REN owner)

docs.google.com

Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families. us02web.zoom.us/webinar/regi...

REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and other partners. Thank you! www.rareepilepsynetwork.org/post/ren-s-2...

REN's 2024-2025 Interns

REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and other partners. These Walt Whitman High School interns have made s...

rareepilepsynetwork.org

Many REN members and partners are seeking candidates for various roles, from marketing to executive director to science/research officers. Sign up to have your information and skills shared with the 150+ organizations that are part of REN here. forms.gle/2kPDy7MNnZj5...

The Curse of Stigma is more than a documentary! The stories in the film empower people to speak out, to tell others that epilepsy is treatable, and that there should be no shame. Watch The Curse of Stigma Film at: thecurseofstigma.org

Join our partners at AGENDA (Alliance for Genetic Etiologies in NeuroDevelopmental Disorders and Autism) at their upcoming meeting. AGENDA is lucky enough to have Wendy Chung from BCH speak on Newborn Screening. us06web.zoom.us/meeting/regi...

We recently got an amazing compliment that our newsletter was one of the most informative in the epilepsy space! Check out our website to sign up to receive it! www.rareepilepsynetwork.org

We are thinking about all of the families who are affected by rare epilepsies who are being displaced by the wildfires in California. Our thoughts are with you!